Testimony of Kenneth J .Friedman, Ph.D.
CFSAC
November 8, 2011
I wish to inform the Chronic Fatigue Syndrome Advisory Committee and=20
other stakeholders in the ME/CFS Community that there is a window of=20
opportunity to potentially restore ME/CFS research, education, and=20
other, related, scholarly activities to one of this country's most=20
populated states: New Jersey. The Governor of New Jersey has formed=20
a UMDNJ Advisory Committee the purpose of which is to advise him as=20
to the future of the University of Medicine and Dentistry of New=20
Jersey (UMDNJ). The options range from doing nothing and keeping=20
UMDNJ, the largest, free-standing, academic healthcare University in=20
the United States, as is, to completely dismantling the University=20
and dividing its components and assets amongst other New Jersey=20
academic institutions. The Committee is now willing to accept=20
comments from the public.
The impetus for the establishment of the UMDNJ Advisory Committee may=20
reside in the corroded image of UMDNJ, forever charred into this=20
nation's psyche, by its purposeful, $35 million dollar,=20
double-billing of Medicare. However, of equal or perhaps greater=20
concern to the ME/CFS Community is the February, 2010 decision of the=20
University to ban ME/CFS research, education and related scholarly=20
activities from the University using the pretext that such activity=20
is not "professional" but rather "personal." According to that=20
policy, any and all scholarly activity related to ME/CFS may be=20
performed performed by faculty only outside of regular, normal=20
business hours. The policy further forbids use of the University's=20
portal to the internet for any ME/CFS-related research, and denies=20
use of the University's email client server for correspondence with=20
anyone about anything related to ME/CFS.
The University's policy to ban ME/CFS scholarly activity came after=20
two, related New Jersey Medical School attempts to minimize the=20
professional nature of ME/CFS related activities: (1) the New=20
Jersey Medical School refused to consider the Consensus Manual for=20
the Primary Care and Treatment of Chronic Fatigue Syndrome a peer=20
reviewed publication despite its having been reviewed and approved=20
for publication by the Senior Editor of Harvard University Medical=20
Press, Dr. Anthony Kamoroff, and its translation into two foreign=20
languages, and (2) the New Jersey Medical School maintains that five=20
years of service on the CFSAC did not constitute professional,=20
academic service at the national level since individuals without=20
scientific background, such as Magic Johnson has served on Advisory Commi=
ttees.
UMDNJ controls all three of the state's medical schools, as well as=20
the state's only dental school, school of nursing, school of health=20
related professions, school of public health, and graduate school of=20
biomedical sciences. This ban of ME/CFS scholarly activity in the=20
University is, therefore, impacts patient care in the greater New=20
York metropolitan areas, as well as the advancement of ME/CFS=20
research, and healthcare provider education and training throughout=20
the United States. Equally important, however, is the precedent that=20
this establishes for other medical schools and schools training=20
healthcare professionals throughout the United States to establish=20
similar policies.
UMDNJ's actions are clearly an attack on academic freedom =96 the right=20
of college and university faculty to pursue their academic interest =96=20
and should be opposed on that basis if for no other reason. If UMDNJ=20
wishes to continue as a university, then it must behave as such and=20
afford its faculty the rights afforded to University faculty=20
elsewhere. For UMDNJ to continue as a healthcare university, it=20
needs to comply with the principle of academic freedom.
Of particular concern to the ME/CFS community, is the failure of=20
UMDNJ to honor the CDC's ME/CFS policy as articulated by its Director=20
in 2006, Dr. Julie Gerberding, who stated, "We are committed to=20
improving the awareness that this [ME/CFS] is a real illness and that=20
people need real medical care and they deserve the best possible help=20
that we can provide." Why does the Department of Health and Human=20
Services' continue to provide funding to UMDNJ when UMDNJ maintains=20
that faculty who engage in scholarly activity related to ME/CFS are=20
engaging in non-professional activity? The Department of Health and=20
Human Services continues to give money to a University which=20
knowingly and deliberately obstructs one of its agency's mandates. Why?
Governor Chris Christie's UMDNJ Advisory Committee has received=20
testimony from UMDNJ employees expressing the belief that UMDNJ be=20
retained in its current configuration. Current employees may have a=20
vested interest in retaining UMDNJ in its current=20
corpus. Stakeholders of the ME/CFS Community may have a different=20
opinion, since dismantling UMDNJ would remove the ban and restore=20
ME/CFS activities to New Jersey's healthcare centers. The CFSAC may=20
wish to make a recommendation to the U.S. Secretary of Health based=20
upon the facts conveyed herein and, perhaps, after its own, further=20
investigation.
According to what was published by UMDNJ, comments may be submitted=20
via email to: publiccomment@gov.state.nj.us."
The window of opportunity for submitting comments is not specified.
I would not wait long.
Thank-you for your attention.
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